Family faces the high cost of caring for girl with rare disorder

Kimberly Fort, mother of Violet Grace Fort, 4, left, kisses her daughter on Sept. 11 at their home in Dunnellon. Violet has Rett syndrome and a cellular disorder, which keep her confined to her wheelchair, unable to communicate or even do very much with her hands. Violet is growing and soon will need a new lift for her wheelchair, and the family is trying to figure out how to pay for it.

Published: Sunday, September 29, 2013 at 7:08 p.m.

Last Modified: Sunday, September 29, 2013 at 7:08 p.m.

It's an age when most children are heading off to kindergarten to draw, color, learn the alphabet, sing and make friends.

But young Violet has a rare genetic disorder called Rett syndrome, as well as a mitochondrial cellular disorder, and spends her days in a child-size wheelchair, unable to speak, sit, walk or eat normally.

After Violet was born in 2008, it was quite a while before doctors diagnosed Rett Syndrome, a condition that affects as few as one baby girl in 10,000. Baby boys with the syndrome are stillborn, or die soon after birth, Kimberly Fort said.

Infant girls who have Rett syndrome seem to develop almost normally during the first six months or so, but that was not the case with Violet. Her parents noticed much more quickly that their baby couldn't do things normal infants do.

“Violet's other condition, the mitochondrial disorder, makes her symptoms worse. Later, she pretty much lost use of her hands when doctors inserted her feeding tube. The last time she sat up by herself was when she was 18 months old,” Kimberly Fort said.

A difficult thing for her has been wishing Violet could tell her what she is thinking and needs. There recently was a long-awaited milestone, thanks to an infrared device called an “eye gaze,” that doctors say deciphers eye communication.

“It's kind of bittersweet. You know that it's in there, but you can't hear her say 'I love you,' which you just want to hear so much. But on the eye gaze, she did say 'Mama hug,' ” Fort said.

Cheryl Lawson, the child's grandmother and Kimberly's mother, believes Violet, whom she describes as a amazingly well-behaved, understands much of what goes on around her.

“She has the most expressive eyes, and she just looked as if she loved our recent trip to Disney World. Mickey Mouse came over to make a fuss over her, and I could tell by the excitement in her eyes that she liked it. Also, Violet was able to go on a couple of the rides, which she seemed to enjoy,” Lawson said.

The Fort's older children, including Kimber Fort, 14, pitch in to help take care of Violet and lend a hand with younger siblings. “It's so amazing how they all take it in stride,” said Nancy Myers, a longtime family friend and co-owner of Grumbles House Antiques & Nursery in Dunnellon's historic district.

“It's been difficult, yes, but the family wears it well. They are very graceful about it, and thankful that this little girl is in their lives. Yes, it hurts … but it's all about loving her and making sure she knows she's loved,” said Myers, who has a background in nursing.

As fall approaches, the Fort family will celebrate the life of their daughter by doing something extra. With October designated as National Rett Syndrome Awareness Month by the Rett Foundation in Cincinnati, they plan to reach out to area residents to spread awareness. The more dollars donated to research on how to help the young children with this disorder, the better, Fort said.

Lawson, who owns Two Sisters Antiques & Gifts, and her daughter also are planning garage and bake sale fundraisers during First Saturday Village Markets. The next one is from 9 a.m. to 1 p.m. Oct. 5.

“Violet is growing and soon will need a new lift for her wheelchair. And it costs so much just for the gas to get to her appointments each week,” Lawson said.

Her daughter takes weekly trips to Ocala with Violet. They also travel to St. Petersburg three or four times a month and to Atlanta every three months, Lawson said.

Even the family van, old and increasingly hard to repair, is a looming issue. Medicaid and insurance the family has through Allen Fort's work has helped with medical costs over the years, but otherwise the Ford's have pretty much coped on their own. With the birth of a new son last year, and the needs of other children now in their teens, it is a challenge to make ends meet.

“Kim and Allen never have asked for anything. But it's just getting so much harder,” Lawson said.

The Forts recently posted a video on their daughter's life on Facebook, called “Violet's Voice.” A family member will soon post information about a fund to help the family.

<p>DUNNELLON — Allen and Kimberly Fort, parents of 4-year-old Violet Grace Fort, will soon celebrate their daughter's fifth birthday.</p><p>It's an age when most children are heading off to kindergarten to draw, color, learn the alphabet, sing and make friends.</p><p>But young Violet has a rare genetic disorder called Rett syndrome, as well as a mitochondrial cellular disorder, and spends her days in a child-size wheelchair, unable to speak, sit, walk or eat normally.</p><p>After Violet was born in 2008, it was quite a while before doctors diagnosed Rett Syndrome, a condition that affects as few as one baby girl in 10,000. Baby boys with the syndrome are stillborn, or die soon after birth, Kimberly Fort said.</p><p>Infant girls who have Rett syndrome seem to develop almost normally during the first six months or so, but that was not the case with Violet. Her parents noticed much more quickly that their baby couldn't do things normal infants do.</p><p>“Violet's other condition, the mitochondrial disorder, makes her symptoms worse. Later, she pretty much lost use of her hands when doctors inserted her feeding tube. The last time she sat up by herself was when she was 18 months old,” Kimberly Fort said.</p><p>A difficult thing for her has been wishing Violet could tell her what she is thinking and needs. There recently was a long-awaited milestone, thanks to an infrared device called an “eye gaze,” that doctors say deciphers eye communication.</p><p>“It's kind of bittersweet. You know that it's in there, but you can't hear her say 'I love you,' which you just want to hear so much. But on the eye gaze, she did say 'Mama hug,' ” Fort said.</p><p>Cheryl Lawson, the child's grandmother and Kimberly's mother, believes Violet, whom she describes as a amazingly well-behaved, understands much of what goes on around her.</p><p>“She has the most expressive eyes, and she just looked as if she loved our recent trip to Disney World. Mickey Mouse came over to make a fuss over her, and I could tell by the excitement in her eyes that she liked it. Also, Violet was able to go on a couple of the rides, which she seemed to enjoy,” Lawson said.</p><p>The Fort's older children, including Kimber Fort, 14, pitch in to help take care of Violet and lend a hand with younger siblings. “It's so amazing how they all take it in stride,” said Nancy Myers, a longtime family friend and co-owner of Grumbles House Antiques & Nursery in Dunnellon's historic district.</p><p>“It's been difficult, yes, but the family wears it well. They are very graceful about it, and thankful that this little girl is in their lives. Yes, it hurts … but it's all about loving her and making sure she knows she's loved,” said Myers, who has a background in nursing.</p><p>As fall approaches, the Fort family will celebrate the life of their daughter by doing something extra. With October designated as National Rett Syndrome Awareness Month by the Rett Foundation in Cincinnati, they plan to reach out to area residents to spread awareness. The more dollars donated to research on how to help the young children with this disorder, the better, Fort said.</p><p>Lawson, who owns Two Sisters Antiques & Gifts, and her daughter also are planning garage and bake sale fundraisers during First Saturday Village Markets. The next one is from 9 a.m. to 1 p.m. Oct. 5.</p><p>“Violet is growing and soon will need a new lift for her wheelchair. And it costs so much just for the gas to get to her appointments each week,” Lawson said.</p><p>Her daughter takes weekly trips to Ocala with Violet. They also travel to St. Petersburg three or four times a month and to Atlanta every three months, Lawson said.</p><p>Even the family van, old and increasingly hard to repair, is a looming issue. Medicaid and insurance the family has through Allen Fort's work has helped with medical costs over the years, but otherwise the Ford's have pretty much coped on their own. With the birth of a new son last year, and the needs of other children now in their teens, it is a challenge to make ends meet.</p><p>“Kim and Allen never have asked for anything. But it's just getting so much harder,” Lawson said.</p><p>The Forts recently posted a video on their daughter's life on Facebook, called “Violet's Voice.” A family member will soon post information about a fund to help the family.</p>